Thursday, December 31, 2009

Our First (real) Christmas at home! I say that because this is the first year we've celebrated Christmas at our house without traveling elsewhere to see family (they came to us this year). What a treat! I have to admit, it was stressful...and I didn't get everything done that I wanted...but I think the holiday went well. Here are some of our new traditions.

Advent TrainSince E knows her numbers and can count, I'm starting the Advent Train. We've had other Advent calendars, such as the Little People Advent Calendar and a family heirloom, but the Train is different. I put in a little note in each box, and every day E can read her little challenge--which typically entails a Gross Motor Exercise and a prize. For example: Without holding on or falling, walk to the front door to pick up your prize from the floor (dollar store treat). Or, stand up two times from the floor (without holding on to anything) and get a Nutcracker Dance with Mommy (where I hold her and dance around the house). Or, help Mommy clean out the dishwasher (she takes out and puts away the spoons) and take a Christmas Bath (red and green theme). We didn't remember to open a door every day, but overall the Train was a hit.

Decorating the TreeWe give E a not-too-breakable ornament; then we do a CME-lift (INSERT VID HERE) for her to put it on the tree. If she is hanging it by herself, she walks/starts/stops on her own and she has to stand tall during or after hanging. She never fell ON the tree, but she did fall several times beside it.

Christmas MusicWe play Christmas Music after Thanksgiving until December 31st. This involves a lot of singing, and lots of dancing around the house. E has gotten better at shaking her hips and dancing without holding on, but is working on her "turning in a circle". E loves to dance and sing, and I'm trying to encourage that.

On Christmas morning, E preferred to make coffee with Nana rather than rush to open gifts. She really appreciates her family being in town (Nana and PopPop live in New Hampshire, and come down for short visits when they can--this ended up more of an extended visit, which was a great blessing in many ways). E got several nice gifts, a few of them being a new pink play kitchen (set aside from her little house to encourage walking and carrying light objects), some educational games, and my personal favorite, the Barbie Guitar. This is her first time using it...guess she's a natural!

My family came down the day after Christmas, and we had a great day just hanging out and playing. E gave us another concert, which was great, and of course Vivian was into everything, as she's now a walker (and starting to run around some). We had so much to be thankful for this year...E is so much more able, and so supportive of her little sister; Vivian is healthy and doing all the age-appropriate things she should be; we were lucky enough to have our families with us this year, and were given the opportunity to witness how precious life and family is. Merry Christmas!

Thursday, December 24, 2009

I was home with the kids, and Jason was at work. It was a typical day off--me still in my pajamas, as I hadn't had enough time to get myself together, as I was tending to Vivian, keeping her out of danger (now that she is walking), getting E exercised, both kids fed, not fighting, etc. I had just put Viv down for a nap, and was getting E's lunch together, when something extremely unexpected happened.

Our doorbell rang.

Two neighbor girls were at my door in their snowsuits.

"Can Elena come out and play?"

HUH? Honestly I did not know what to say...this has NEVER happened before. Sure, E has seen and probably played with these girls in some fashion, maybe while we were all on the same swingset in the summertime. Or some other time when everyone was already outside. But for someone to approach our door, blindly, asking E, without provocation, to come and play? IN THE SNOW?! The conditions could NOT be more difficult...I mean...were they serious?!

I asked the girls inside. I directed my caution at M, the older of the two girls (she's 10). "I hope you realize Elena is...um..difficult to handle, especially in the snow..." "Oh I know. I see E every day at school at recess. She gives me a hug every day. I can handle it."

I'M SHOCKED. "Okay..well, I can't go outside with you girls, as I need to be with Vivian...but I'll come out as soon as I can. You just come in the door and holler if you need help."

And I'm thinking, OMG they are going to come in and start yelling that E is face-first in the snow and they can't get her up or something. I'm trying not to freak out, looking out the front window as they help her into the snow. They play in the snow fort we made up the past few days, and they're just hanging out. WHEW.

Then I start crying. No one has ever come up to our house before to ask if E can play. EVER. It's just so...normal. And these girls weren't phased at all by E's difficulties...they were so nice, encouraging, sweet. So I got on the phone to M's mom, trying not to cry, but thanking her so much, as this little act of friendship meant so very much to our family. M's mom said 1) that she didn't know anything about M's plan to ask E to play, and 2) M talks about E just about every day. She says she has really noticed how she has changed this year. I'm amazed someone so young notices so much about my hard-working daughter.

Then my door opens. "Is Elena allowed to sled?" asks A, the younger of the two girls. "Sure", I say, wondering how they are going to get E up a considerable-size hill in thick, slick, iced-over snow. I start figuring out a way to get Viv's monitor outside and put on my boots/coat over my pjs. I run outside...

To see that M and E have already gone down the hill once. E is LOVING IT. I have no idea how M's little 10-yr old body could hoist E up that hill, I'm sure E didn't walk up it herself, but somehow they did it. I got out and helped, as I'm sure they couldn't carry E forever. I'd help E walk up the hill, then they would sled down with her. A's dad was outside, and again, I broke into tears about how special this day was. He has 4 kids, all normally developing...but he understood. Both M and A both have younger siblings, so if they wanted to play with someone younger they could have. But they came to our house, to play with E, to help her and just be around her, b/c they felt like it.

The most ordinary thing in the world, right? No...not for us. For us, today was extraordinary.

I can't say it enough...and I wish I was more eloquent in this post, but I'm tired and emotional...

Sunday, December 20, 2009

I wrote an entry a long time ago about kids and their sleeping issues. I have pretty much chalked up E's waking up and crying/screaming issues to bad parenting...we must be reinforcing some bad behavior, but we don't know what it is, and we haven't figured out how to stop it. In short...E rarely has a "good night". By rarely I mean...once every two weeks? Maybe?

We try to "switch it up" when we can, and that's only after some big change of events. Like, if we have to spend the night in a strange place, then when we come home, instead of going into E's room if she screams, we'll approach her door and say "we will come in when you speak to us in a nice voice". Recently, E was sick for a whole week with strep throat. So, screaming only made her condition more painful, which made it even more to cry about. So we held her on the couch. We cuddled with her when we could. I mean, E was miserable, she was sick, she was throwing up, she was feverish...she needed to be coddled and loved, so a parent was with her or on a neighboring couch all night. We started gradually weaning her to her bed, as she got better. And so here we are. Again. Same issues.

What issues? I HAVE NO IDEA. She goes to sleep fine. She just wakes up every night. Sometimes she's not fully awake and crying loudly...I come in and whisper "Elena, what is happening?", you know, in case she says she's being eaten by a dinosaur or something. Last night I got a "I can't stop". (this is a big deal, normally I don't get any words) "You just can't stop what?" "I just can't stop being bad" [SCREAM]! Here we go again.

So...here is my confession. I've been harboring some harsh judgement for some parents who "medicate their kids" to make their lives easier at night. Like, they don't even give their kids a chance to behave before they've already shoved a pill in their mouth. I'm pretty opinionated about that. And to be frank, I know some parents who now medicate their kids, who felt just like I do about it. Well, when E was sick, she had some codeine-laced concoction for pain and to help her sleep. I remember from SDR, she doesn't do well with codeine, it seems to make her nauseous. It did make her sick, but only a little, and after that she slept pretty well. I didn't want to do that again, but I considered using Benedryl, which is what some of the "medicating parents" give their children. I insisted it wasn't for my convenience, but for E's, who has had 5 very sick nights and needed rest to get better.

The night was just about perfect. I admit it. She got up once, I pressed the blanket to her, and she went back to sleep.

The next night I thought maybe the memory of a good night's sleep (she acknowledged she felt great the next morning) and a fun tiring day would be enough for another good night. WRONG. And so here I am writing this post.

So here I am. I feel like a failure when it comes to nighttime parenting with E. Jason and I share this frustration. We tend to tow the "hard line", meaning we show E we are not going to put up with screaming behavior and remove her from her comforts. We don't spank, we don't yell, but we use silence as a reinforcer and explain things in nice voices when she is ready to listen--which she does, and she does acknowledge she has been behaving badly. I think she gets the idea of punishment (in this case, she doesn't get to return to her nice warm bed after a meltdown), but she sees it coming and then gets upset b/c she knows what will happen. She understands choices, and knows the choices are hers. And yet this happens just about every night.

What I am learning is this is a huge stress for my husband and I. That one night when Elena isn't a nighttime problem, was as if the Heavens opened up and music started playing from the parting clouds ("aaaah!"), SERIOUSLY. If we could fix this, our relationship would improve so much. So here I am.

I'm going to try one week of Benedryl. I'll write a post about it and my thoughts once it's over. I feel defeated...but maybe one week is all I need? To get E in a good pattern? It is worth it to me.

Sunday, December 13, 2009

I had an idea of throwing a Winter Party. This was a big deal to our family, as this is our first real winter where E is partially independently mobile. (I'm not sure if "partially independently mobile" really makes sense, but she's a LOT less work than last year, and she can do so much more now.)

I called up our local ice rink and told her my situation. Big party, lots of kids, and oh yeah--my kid has cp, is this going to be a problem, yada yada yada. The assistant manager instantly came out with a disclaimer that the ice rink is happy to accomodate kids with special needs. I was a little surprised. The day I picked was perfect--there happened to be an hour block of time between two scheduled events, and the park wasn't going to be able to host a public skating session in that short amount of time--so they gave me the private ice time for free. We had dinner catered at the park for our guests, and worked a reduced group rate for the skate rental/admission.

Everything was a go...until we got there. There was a snafu with our private ice time...as someone was already using it due to a schedule mix-up. Like I mentioned before, we were sandwiched between two other events--so we had a limited time to get our ice squatters off before we had to vacate for another group. This was a challenge, b/c person in charge of the group on the ice during OUR time was a real jerk. But kudos to the Charlottesville Ice Park Staff, b/c they were really nice about dealing with this problem, and kept a pretty cool head while I was just about blowing my top. I'd also like to personally thank the lady in charge of the hockey group that was using the ice after us, but I forgot her name....she was very nice and understanding, and had my back the whole time. Due to the snafu, the assistant manager waived all fees for rental/admission.

Everything worked out, though...our friends loved dinner, and had a nice (?) time eating (and waiting) and getting their skates on while I ran around and tried to get our ice time. The kids got on about forty minutes late, but everyone got to skate, and seemed to have a great time. The hockey team got to warm up while we were out there, and even helped the kids skate around too, which was so nice of them! We only ended up having 20-30 minutes of ice time--but that was PLENTY, as most kids were done before I had to usher them off the ice.

A nice bonus to this little party was just about all of E's friends were new to ice skating, so it worked as a great equalizer. Everyone had issues on the ice. FYI: E wore her DAFOs in her skates--they were a little tough to get on, but it wasn't too bad. Overall Elena did a good job of "keeping her feet under her", even if she was holding on to my hands strongly the whole time. E LOVED skating...and boy was she tired!

Mommy and E just before we get on the ice

Here we go!

E and I skate to Grandpa

I tried holding only one hand (and alternating hands). We did it a little, but E wasn't very comfortable that way.

A lot of the kids had barrels to hold onto; E didn't like it. My guess is she had to lean over to hold on, which made the toe pick stick on the ice.

Thank you hockey players! E was so proud of herself for "skating with the big kids"!

What a great time! Big thank yous to Charlottesville Ice Park, Sticks Kebob Shop, to Grandpa for filming/taking pictures, to Grandma for watching Vivian, and to all our friends for making this such a wonderful experience!

A couple of weeks ago we started our post-CME course regimen. Theresa did some of the new exercises she learned at the training course. She needed a spotter for some of them, so I didn't get them filmed. Here is one, where she is working on core strength and E's righting reflex (she does both sides; only one side shown here).

E also did some of the other exercises previously shown, with Simona as E's operator. E wasn't particulary cooperative, but it's relatively new to her so she's still not thrilled about the feeling of people holding on to her ankles while she exercises.

I also got a regimen to do at home, but I'd rather show them while we're filming at home. We haven't had much practice, b/c E got really sick for a week (and then I got sick too).

The winter season is upon us! Recently, we got a good snow here. In previous years, this spelled disaster for us, b/c E was not very mobile and snow was impossible terrain for her. Sledding was really difficult too, b/c she had issues staying upright on a sled (oh, and we don't have our own yet). It was a lot of us trying (and failing) to entertain her in the snow, when she really wanted to be doing what the other kids were doing. Last year it was heartbreaking.

But THIS year, things are DIFFERENT! E has been so excited about snow. The minute she saw it coming down, she wanted to make a snowman! I had bought her a new snowsuit...so that morning, she and daddy set out on their mission.

We also went to a little festival welcoming the Christmas season at a local shopping square (previous week). They had some dancers from the Charlottesville Ballet, who danced some scenes from the Nutcracker. E loves that music, so seeing REAL ballerinas was a great treat. It was pretty cold that night too...tough to be in a tutu and tights, brrr!

Friday, December 4, 2009

This week has been pretty crazy! Simona DeMarchi came to teach a CME Level 1 Course in my town. The course was for therapists, but Elena was used as a model throughout the course.

I can't tell you much about the instruction. I do know that they use dolls for much of their course, and then they had volunteer kids as models. After observing what they do with real people, I can't imagine trying to get certified using mainly dolls...using real models are SO much different.

A sample modeling portion would go as follows: Simona would discuss an exercise in the CME manual. She would describe the usual patient for said exercise, and then how she would go about it. There were a number of models in the room--four different kids, of different sizes, ages, tone, and diagnoses (for instance)--and Simona would then demonstrate that exercise with each child, highlighting their differences and the difficulty along the way. For the kids, it was a lot of waiting and being patient before being asked to do an exercise. I think it was a lot to ask of these kids, to sit/behave/be quiet for so long--but absolutely necessary to really convey how CME can be used for all sorts of patients. I'm happy we got to be a part of someone's education, and E was a champ the whole time.

CME, from what I was observing, is all about "provoking" movement patterns. The therapist doesn't try to tell the child what to do--the idea is the desired movement should happen naturally and hopefully evolve to a normal response. The exercise to provoke a certain movement or balance response may seem extreme (which is why you need a skilled, certified therapist), but I guess when you have a child with tone issues you need an extreme provocation to jump-start the emerging movement pattern.

Another BIG thing about CME is orthoses and assistive devices are not permitted. Children wear shoes for safety, but not AFOs, crutches, walkers, etc. Most exercises revolve around simple materials--blocks, boards, traction material.

What do I think? In a nutshell, I'm pretty impressed. Simona is confident, knowledgeable, patient, and personable. Elena liked her (and the other therapists in the room). I think E could benefit tremendously from this method--but, I'm not ready to exchange all our current therapies for CME. Two big obstacles are TIME and resources, as CME providers/time slots are very limited. I'd love to start a CME regimen, as it is extremely challenging for E--and it's great to keep therapy fresh, so E doesn't get bored. I am very interested in what it can do for her.

So, how did E do?

Before Simona suggested exercises for E, she needed to be evaluated. There is a battery of test exercises to determine her ability level, based on protective responses, righting responses, and movement. Gross motor-wise, most people reach their definitive movement patterns by 18 months of age (walking, running, jumping, falling, sitting, lying down, rolling, and transitions). Elena's test results put her gross motor skills equivalent to that of a 14 month old.

There are a LOT of exercises applicable to Elena. Some are appropriate for the level taught in this week's course, some are not. I'm not sure which ones--but you can bet, if the exercise looks advanced, IT IS. I have a few film clips shown here--the rest of them will be on The Doodle.

Overall, I was surprised how E "crouched" over sometimes while challenged. I don't see this at home often--then again, she's wearing her AFOs and she's not trying to walk on a balance beam, or an unstable surface, or moving without a handhold close by. I'll be very interested to see when and if this balance compensation/posture changes.

Monday, November 30, 2009

This holiday weekend was a busy one. We tried to exercise E every day, mainly to get her good and tired for bed (that wasn't too successful).

I've tried different things in this hallway: here is E trying to walk the way down the hallway (she used her crutches elsewhere in the building). The video is in two parts, as she falls once during her attempt. Her speed is good (not too fast), and her confidence is pretty good too. When she falls these days, her typical response is "I'm okay". My typical response is "everybody falls"--which is true, as we've all been there.

We have so much to be thankful for this season...here are a few gems from our holiday.

At E's school, I was invited for a Thanksgiving Feast with her class. The kids sang some Thanksgiving songs for us--if I get permission, I'll post the song video, but until then, here is a pic of E from a video still--in her Turkey Hat.

I was particularly impressed with E's teacher: she did a great job of having Elena use her crutches for the "concert". This is significant, because Elena doesn't normally use her loftstrands in the classroom, but does need them for long periods of standing. Even though the other kids jump around, sing and use their hands for interactive songs, turn around--things Elena does not do--she was still "just one of the kids". Thank you Stony Point and Mary Beth, for giving E the chance to be just a kid in public school. Thanks also to her classmates, who are quickly becoming her good friends.

We went to my parents' house for Thanksgiving. E and Grandpa make a Thanksgiving Turkey decoration every year. Elena loves tools, so Grandpa makes sure she gets to use plenty during their project.

E, I am very thankful for YOU. You have taught me so many things...patience, faith, love, perseverance. You help me appreciate movement, balance, and language. Thank you for making me a better mother and teacher. Thank you for being so good to your little sister, who looks up to you more than you'll ever know. Thank you for being so STRONG, strong-willed even, and for being so open to new challenges.

Thursday, November 19, 2009

So, I'm on a couple of newsgroups. Some of them I really like. Some of them are just garbage.

I find out about a lot of different PT approaches/"alternative" therapies through these groups. One person in particular caught my attention--she is a grown woman, with spastic diplegia, who keeps an open mind concerning techniques that might facilitate her movement. I figured, here is someone who may be like a Grown Up E, who might be able to give me some insight as to what it's like to be a kid/teen/adult living with CP.

So I emailed her, and asked her if she would read this blog. And that I would appreciate any comments she had.

Overall, she was very nice. I didn't ask her to be nice, but I certainly value it. She thinks E is adorable, and that she's nicely challenged and doing very well. She also had some choice words for ME.

"You need to stop nagging" (in terms of E's posture) was her big criticism. And you know what? It burned. Ouch. Jason and I (constantly) remind E about her form to try to help her...but that comment was SPOT ON.

She's right. E tunes us out when we bark at her to "keep her feet down" or "stand up straight" or [insert voice cue here]. We praise her too, but it's drowned out by "posture nagging". I DO think voice cues are important, but obviously they aren't going to work well if she's peppered with them every three seconds by her parents. I wish someone had brought it up sooner, we didn't realize how often we do it.

We checked in with Dr. Elias for our 9 month post-op. They looked at her flexibility, strength, how she's moving around now. Everyone thought she looked great. They didn't really have her do much...she walked 5 paces to a step (a big one), which she got up on, and then onto a table. She sat on it, and she raised her right knee, and then her left knee. They asked her to raise both arms, and wring both hands. And that was it. I'm not sure what they are looking for...but if they want a good sense of how she moves...they should just check this blog.

I'm not sure if I mentioned this before, but Elena has a leg-length discrepancy. Her right leg (femur, I believe) is a little longer than her left. With her tone/weakness issues, this discrepancy is practically larger. To remedy this, Elena needs an insert in her left shoe to help equalize the functional length of her right leg. She can't wear an insert inside her shoe; the AFOs take all the room. So, we have her orthotist put the shoe lifts in-sole. That can take time...so we used her old summer sandals while her shoes were in the shop.

She did a pretty good job--kept her heels pretty low. Her gait looked a little funny, more of her feet outwards, and her knees up high...but the big deal was, it looks a whole lot better than I thought it would. Check it out:

She has been trying to walk at home in her bare feet. She used to be able to take 3 steps and fall, that was the maximum. Now she'll try to go across the room (10 steps); sometimes she can make it. On her tip tippy toes. Who knows if we can get her bare feet down.

Wednesday, November 11, 2009

Last weekend E did lots of fun things, one of which was going to our favorite playground. E brought her friend J this time.

There is a little playground (for toddlers), and a larger playground for older kids. Elena typically stays at the toddler playground--she still needs assistance for some parts of it--BUT NOT MANY!! She is supervised on steps (but rarely helped, as there are handrails) and while navigating the structure, as there are openings that she may fall through (we have not had a fall scare so far). Her biggest issues on this playground are 1) a hump she needs to go over, typically she almost falls here and has to hold on to the side wall with both hands, 2) a depression section, where almost the same things happen as the hump, and 3) when she is trying to sit down to slide--there is a handlebar above the slide, which she hangs on to, but the gap between her rear and the slide is so large she isn't able to sit down without help (she'd probably let go, and as her butt would hit the surface, her head would too). Still, she is navigating up and down the steps pretty well (some difficulty/frustration with her right leg), and climbing very well, and walking around and under the play structure without assistance!

Whew! Goin' for distance!

She also did the swings (can pump herself, but not start from a stop), and she also went on the big kid playstructure. I was helping another child--and she managed to climb up a chain ladder and into the playstructure all by herself! I'll take a picture of the ladder and post it

Sunday, November 8, 2009

Last week at PT E spent a lot of time moving around. We've adapted her new AFOs (Cascade DAFOs) and I think with one more tweak, they'll be just right. E's gait is can be described as follows: can walk toe-heel, flat-foot, occasionally heel-toe, with the majority of her weight bearing on her left leg. She will take a long stride with the left foot and a small step with the right. Her arms are usually bent, and up around her midsection, and she swings them for momentum. When she is tired, her swing is larger, and her knees and feet will turn toward the midline. We try to keep her stride SLOW and SMALL, as we are trying to foster good walking habits. She can turn around, but not pivot.

Theresa had set up stools as stepping platforms. E does NOT like this drill, b/c when she steps up or down, with her crutches or the handrail, she tries to muscle her movement through her arms instead of through her feet. Since there are no handholds with the stepstools, she wasn't excited about the task. So, she invented this new game:

There are some more PT videos on The Doodle.

Here is E trying to work on her small stride, as she was tasked to walk down the ramp solo with her crutches. Lookin' good!

Monday, November 2, 2009

On Halloween day (E wore her costume all day), E was scheduled for our first "real" stab at Feldenkrais. By that, I mean several sessions in a short span of time. Our plan was to have two sessions today (about 1 hour each), and then one two days later. It's hard to put into words (or video) the feel of the session, b/c a short clip really doesn't show much or do it justice. But, here goes...

Here are my impressions.

1. Keith is very patient. He talks very softly, and gets Elena to do things--this feat, alone, is amazing. He can command her attention by talking quietly, or not talking at all.

2. In order for E to be receptive to this gentle persuasion, it takes time. A lot of time. Meaning, the first half of the session it was basically playing with E, and getting E used to the idea of "mirroring" without telling her what to do or even that that was the goal. But by being quiet, and letting E lead part of the time, and "taking turns", it got E to be curious, and gave her some autonomy.

3. This autonomy is crucial. Keith is trying to get Elena to realize, on her own, how to move her body in a new way. For example: I spend a lot of my time barking at E to put her heels down; Keith tries to convey that having her heels up is just another way of moving--that nothing is "forbidden"--but that there are other ways of standing, sitting, moving. I think she is receptive to his message (not necessarily to mine).

Does it work? Well, that's hard to say. I'm not sure. I AM sure that we haven't wasted our time doing this, and we'll pursue it when we can. As far as real eye-opening experiences, here are the big things I noticed during our two sessions:

1. E was TIRED. She was really working hard. They did lots of transitions--all kinds of sitting, throwing balls, switching leads, standing up, balancing on balls, kicking, kneeling, etc.

2. For the first time, E had to think what she was doing with parts of her body she never thought about. For instance, she thought about what her arm NOT throwing the ball was doing (normally they move more or less the same way--both arms throw, only if one holds the ball) and got her to change it. That is DEFINITELY new.

3. When she was tired, she let him move her around. Let him touch her back, bottoms of her feet, let him move her legs around in all different motions. I don't think she would have let me do this, but she was tired, trusted Keith, and loose--her spasticity wasn't too problematic for most of the motions, probably b/c of her state of mind (or fatigue).

And, here's the kicker: we played soccer today (one day post-Feldenkrais) and I tried to get her to do a new soccer drill, where instead of just kicking the ball (or running into it, I should say) I had her put one foot on the ball, take it off, put the other foot on the ball, take it off, stand tall, and then kick (with handholds). She's never done that before. Keith spent a long time having her feet moved around, rolled on balls, foam rollers, etc. I didn't film that one: I'll film again and post

HERE.

4. On our third session, E was quicker to adapt to Keith's "lessons". This time she let him situate her face-up on a table and let him stimulate her feet and move her legs around (more of a classic starting point for older patients). He also made E a mat, with the clandestine goal of having her move different limbs independently (like a "Twister" game). He never showed her what to do, or what the goal was, but by the end of the session she was curious, and willing to identify where her arms and legs were trying to go.

E on the table

E likes Mr. Keith so much she sets up Mr. Zebra so she can treat him

E's "Twister" Mat

Overall, I am very pleased. Not just b/c I see the potential of this method, but because it is so very different from the other things we are doing. I am learning a lot, too. Keith doesn't bargain, or tease, or reward, or insist on movement styles, like I and other therapists do. Don't get me wrong--those things are valuable, and have DEFINITELY paid off. Keith has a very patient approach to movement, and he really makes E think about what she is doing. I'm not sure how much progress we will make, but I'm curious to find out, and E enjoys the time.

Sunday, November 1, 2009

Elena was a giraffe this year! I incorporated her loftstrands into the costume as her front legs.

Giraffe Front ViewGiraffe Side View

Some Halloweens have been pretty hard...especially before E was more mobile. It was hard on me to see all those kids moving around, being so cute, having such a good, easy time. But it got better.

This year, our goal was to go to at least 5 houses, with E using her crutches at every house. E had to do something, but not necessarily everything, at each house we visited--go up the driveway, up steps, down steps, across stones, etc. I pushed her in her stroller inbetween houses. She did very well, especially considering she had 2 Feldenkrais sessions, with a lot of walking downtown inbetween (she did nap before trick-or-treating).

We went trick-or-treating with some friends from down the street. That was another nice treat--this is our first year planning on going with friends. It was really nice to be included in a group.

E went to over 10 houses! She even braved some "spooky" ones, but didn't want to hang around after getting some candy. When the kids were done, we ended up going to G & R's house for a bathroom break--and ended up playing there for over an hour! E went to their basement playroom, and I tried to let her just navigate it on her own. E was AWESOME. She walked the whole room (at least 13 feet), and only fell once. The other kids were great to her. She did their indoor slide on her own. She tried to stand up from the floor on her own several times, succeeding once. She also didn't complain about her AFOs hurting! This whole experience made me think, someday SOON, she'll be able to play safely in a strange place, with other people, while I am in another room.

PS. Like her costume? If you have or know a child--especially one that has loftstrands, and they would like to have it, let me know. I'll pick from responses and send it to you. The costume is size 3T shirt (I think it runs small), and the pants are modeled after a 3T pant. FYI, E is close to 36" tall and weighs 26 lbs. I made the pants by piecing material together; the pants themselves to not have elastic, but are sewn to 2T "bloomers" inside the pants. I'd be happy to hold the costume until next year, so you can see how much your child has grown in the hopes it will fit.

Monday, October 26, 2009

E's sister Vivian was born just before Halloween last year; we called her "La Pumpkina". Elena has gone to Belvedere Plantation for their Pumpkin Patch for the past 2 years--it is THE BEST! Even years ago, when Elena was not as mobile as she is now, there is so much for her to do...it keeps on getting better, every year. Pumpkins, picture opportunities, corn mazes, face painting, little ride-on tractors, haystacks to climb, slides, ziplines, pig races, tractor train, hayrides, petting zoo...the list goes on and on! This year our friend Oia (who also has cerebral palsy) and her family came with us. We brought our wagon and E's crutches--she mostly rode in the wagon, as the terrain is "extreme" (hills, valleys, rocks, hay, etc.) but she did a fair amount of walking and climbing.

E and Viv arrive at Belvedere Plantation

Our Family

E and Oia at the top of the haybale

E's on top of the World!

Daddy and Vivo in the Pebblebox

My two little Pumpkinas

E on the Zipline

Viv on the Zipline

E, Viv (and I), Oia (and Aunt B) on the Tractor Train

E, Mo, and Oia on the way to the Pig Races

Hayriding to the Pumpkin Patch

E, Oia, and their pumpkins--Viv is losing interest

Hours at the Plantation makes very tired kids...overall, the girls were really well behaved. Viv started losing it at the end of our stay, so E kept her busy--being a great big sister the whole time!

Thursday, October 22, 2009

We did a lot, but here's the highlights. We've been working a lot on getting E to SLOW DOWN, so she can better control her movements. Here is Theresa trying to get Elena to stand up, walk, STOP, and step down.

E has also been doing some great walking (FYI, she's in her current--purple--AFOs here). We have a goal of E walking 100 feet, with distant supervision. This supervision isn't so distant, but E looks pretty confident, and she turned this corner very well.

And now, for the BIGGIE of the day...E stands up! We've been working on this for SUCH a long time now. She can stand up from the floor, without assistance, maybe 25% of the time. But she can do it. Practice, practice, practice!

Tuesday, October 20, 2009

This is ALWAYS a struggle...trying to get a new pair of AFOs to work when E grows out of her old pair.

So, here is my current dilemma: basically, we got her new pair, but for lots of reasons, I don't like them. We're trying out the DAFO model. E's previous pair are made of very hard plastic and have some interesting straps to keep her feet down (especially her right foot)--but they work very well. I'm putting together my best side-by-side comparison, to try to convince myself (and everyone else) that I am not crazy.

As you can probably tell from the previous posts, E has issues with standing up straight and putting her feet flat. Why on Earth would you create a brace at an angle that promotes her stance in a crouch position?! E has to fight the DAFO to stay upright. The DAFO inner plastic is soft, so it is more "comfortable" but it also allows her to wiggle out of the shoe, no matter how tight you make those velcro straps. And I have put them on TIGHT. Her old AFOs are very rigid, but with the ingenious inner strap she really stays down in the brace. The same strap does put a lot of pressure on the top of her ankle, but she normally does not complain about it, and with a nice tongue to dissipate the pressure, we haven't had any problems (aside from growing out of these braces).

The Motion: DAFO (new; top vid) vs. AFO (current; bottom vid)

Tonight, I tried very hard to get E to move in both sets of braces for a comparison. She didn't want to cooperate, so this footage was shot after a long evening of bargaining. She's not at her best here. Her new braces (and shoes) are bigger and heavier than her old pair (that's always true) so she typically drags for a while. Still, I think she drags both feet, and spends more time with her knees bent (especially the right) with the DAFOs. AND, after less than 10 minutes of being upright, E is out of both the left and right DAFOs by .5 and 1.5 cm, respectively. After 10 minutes with her AFOs, she's out of the right by about .5 cm, and totally in the left one.

The Pros and Cons: DAFO vs. AFODAFO (new, pink): Pros--easier for school staff to understand how to take on and off, dissipates pressure well with soft plastic Cons--heels slip out, braces are bulky and harder to fit in sneakers, badly hinged, encourages crouch (?), heavyAFO (current, purple): Pros--light, holds E in well, fits in shoes relatively easily Cons--difficult to put on, straps and velcro easily wear and tear

Saturday, October 17, 2009

E LOVES mail. Doesn't everyone? But how many people actually send snail mail these days?

Is anyone interested out there in a mail exchange? I'm aiming for Christmas time here, but really it can be anytime before the New Year. Elena can (help) write a letter, to you or your child, and get a letter in return. No gifts, just a nice letter, maybe a picture.

If you are interested, please email me (cpmom2009@yahoo.com) with the following information:

Your name (and/or child's name)You address (in full, including country)How long mail will take to arrive from Virginia, United States (if you know)What holidays you celebrate, if any, near the end of this yearPrimary language (don't worry if it's not English! We'll try!)

I will not share your email information OR addresses with anyone without your permission. As of right now, this exchange is between E and you. If you are interested in a larger exchange, where your information is shared with other interested parties, please note that--if there is enough interest I'll email everyone privately, and we'll go from there.

This week Theresa had E trying to walk down the ramp with her crutches. She can do this around town, but the decline may not be as steep. One of our goals is for Elena to be able to walk with her crutches up and down hills. She's getting it. First, bowling;

Then, going down to get the balls:

Not too bad!

Later in the session E worked on getting up to standing from the floor--at mat, actually, which probably upped the difficulty. Overall she did well--she looks better than she has in the past. She is able to get the soles of her feet under her rear, shift her weight back, and start to push through the legs to stand up. Pushing all the way up, while maintaining balance, is the biggest challenge right now, as well as standing motionless once all the way up (i.e., not falling forward). This drill was done several times in succession, and she got very frustrated and started standing up quickly (to be done with it) without regard to balance, so she fell right back down (adding to the frustration). This vid is actually at the end of the trials, after she got focused.

What a great city! I went to Chi-town to watch my sister run the marathon--AWESOME! And the kids loved the marathon paraphenalia I brought home.

E says she wants to run like Aunt Kate. I tell her she has to walk first! Still...one dream I have is that I run a little "race" around town, like a 5K or 10K, and E finishes the last 10 feet or so with me. Ideally she'd move independently--but even on her crutches, it would be GREAT. We'll work on that for next year! Maybe her birthday (April 30)?

We've been doing this since the summer. Having a handicap parking placard helps, as it gives you room to maneuver between cars. I have E do this whenever I can. Getting back in is another story...she has started to climb back in the car, but can't get into the carseat yet. I'll post that attempt

At PT last week we worked a little without E's AFOs on. Sometimes this is a nice break, as it's a new challenge for her, and it keeps PT fresh. We're still trying to get Elena to understand that we want her feet flat when she steps. Reminding her about it (her right foot, especially) is like a broken record. Still, when given a voice cue, she does it.

When she's on Shoe Breaks at home, she's recently started taking some steps (maybe 3-5) to get somewhere. Walking barefoot is a very new thing for E (normally she crawls). She is completely on her toes when she does this. Still, she's never done it before..so we have to start somewhere!

One of my biggest issues right now with E's walking is since she can ambulate in some way to get from A to B, she isn't interested in doing it "better". She wants to do it her way, b/c she knows she can do it, and she's fast. I think this will be an issue, with many things, for many years to come...

Thursday, October 8, 2009

As I posted before, there will be a CME certification course here in Charlottesville. This is a big deal, as there are very few providers in the United States. The course is for therapists to obtain a CME level 1 certification. Parents who would like their child to be a model are welcome--it will be free of charge (for parents; therapists pay for the certification course). The dates are November 30th to December 4th.

If you are not familiar with CME, go to Ramon Cuevas's website. I think this approach is fantastic. It really speaks to me, I think it makes sense to promote balance and movements this way.

Please TELL YOUR THERAPISTS about this. Encourage them to register. If you can make it, bring your child--please coordinate through the director of our local therapy center, Molly (see registration form for information). We have 6 spots available.

Just to let you know how valuable I think this is...I am considering a trip to Canada so Simona can see Elena privately.

**I am having difficulty with others viewing these links: these are text versions of the letter/form. Hope this works!**

Sunday, October 4, 2009

Today Jason brought the girls to catch the end of my soccer game. After the game was over, E wanted to go "score a goal" on the field. She did her BEST walking on grass I have seen to date. I'd kick the ball forward about 4-5 feet, help her get steady, and then she would walk to it and give the ball a kick (or, more accurately, run into the ball with her legs). She doesn't fall right away while kicking, but she always eventually goes down. I'm trying to get her to walk, stop, kick, stop, walk. That's not working too well, though.

Here is E walking on grass. I wasn't filming anything at the beginning, so this is at the end of her grass time.

After that, we all went to the playground next to the field. It's not for toddlers (steps too large, slides very tall, etc.) but we did it anyway. She did some good climbing, and at the top was a twin slide. I showed her what I didn't want her to do, and then how I wanted her to do it.

Now, I'm not sure what I did differently--but obviously something was different about today. SHE GOT IT!! A first--E stays sitting up while descending a slide!

Sunday, September 20, 2009

I took E out with a new toy today. I bought her a Kinderbike, b/c I thought she would (eventually) be able to do it. We tried it two different times, about 20 minutes apart. She doesn't really get it yet; she knows to kick her feet out and "walk" them forward, and she knows to sit on the bike seat, but she doesn't know how to do them at the same time. My goal is to start with rolling back and forth, and standing while rocking the bike side to side. I think once the feeling isn't so novel, she'll be able to engage her legs better--right now her inner thighs are too tight for her to move well when she is on the bike.

Her reward for being so patient with me was going to the park. She has to get out of the car (I'll post a vid of that, I keep forgetting) and walk to the park with her crutches. There is a pretty big obstacle from the parking lot to the park, however.

Curbs.

We've been working on going up steps with crutches...SHOWTIME!

She can now navigate a lot of our playground by herself (but one has to stay close in case she falls). E loves to climb, and once we were through the structure and the monkey bars, she wanted to go swing. Here is she trying to get there herself. She is walking on mulch, up a slight hill to the swings.

She can also pump the swing herself to keep moving. Usually she is good at this; today, she really wanted to swing high. Right after this vid, she straightened her legs (and her torso, unfortunately) at the wrong time and nearly fell off the swing (a first).

The last part of our playground trip was the slide. As I've written before, E hasn't been able to stay sitting up while descending a slide--I guess she is so excited she stiffens up. She also does this when she's throwing objects in a sitting position, so we've been working on leaning forward while throwing in ring-sit. I think we are making progress; at the beginning of this slide, she stayed sitting for a little while--more than she ever has.

This weekend we went to visit family in Maryland. Elena loves "sports", so she entertained everyone by playing "basketball". Her throwing is actually getting pretty good! I am trying to get her to bear more weight on her right foot, and try to keep that leg straight.

We also got to spend some time at the playground down the street. Typically E only walks (poorly) on a smooth, flat surface. She's game to try anything, though, with a parent behind her. Here she is navigating a flat playground on tire mulch. I think this would have been even better with her old AFOs (she keeps popping out of her new DAFOs, which she is wearing here).

Sunday, September 13, 2009

Today E said she wanted to ride her scooter. And I had to work...so, Scooter at the Hospital it was!

Here is E rounding the corner to The Life Less Ordinary Hallway. She has trouble with her right knee collapsing, but she is trying very hard to keep it in-line with her foot. This is a HUGE improvement from the first time she was on the scooter.

Scooting, right leg push--LOOK OUT, she's fast!

Clip showing right and left leads

After all that scooting and a cool drink, she's on the move after chatting with The Coffee Ladies.

Saturday I took E to her first Kid Builder Clinic. She got to use a real hammer (adult size), and make a wooden project (this one was a drum). She LOVED it!

The children sit on the floor in the store to do their project--this was a little difficult, since E had her braces and shoes on, which makes Taylor-sitting difficult (and then using her hands on top of that). She sat with a little lean, but overall she did well. She did almost whack her fingers a couple of times (Mommy to the rescue!).

At PT Theresa had Elena do a lot of her normal exercises wearing with her new DAFOs. I had low expectations, b/c her feet will feel very different, and her shoes are much heavier/bigger b/c to accomodate her new braces she had to go up a full shoe size.

Overall, not too bad. She spent a lot of time doing steps with her loftstrands (not shown) and going up and down the ramp.

Note how far out she puts her crutch when going up the ramp--that's so she can put her weight on her left leg (dominant leg) while doing most of the work.

Here is E walking in her new DAFOs. She might have moved a little better if she wasn't holding something. Still--she made it!

Two weeks ago Elena got her new AFOs. They're DAFOs, actually. Our orthotist recommended we switch to this brand b/c he thought E would stay better in the "foot cage".

PICTURES HERE

Well...I had my doubts. First of all, the entire inner portion of the DAFO is soft, and it slides into a harder shell--this was completely unlike her last pair [UPDATE LINK]. Once she put them on, she said they felt good and she liked them.

We've been trying to work our way into the switch, but it's been difficult. She says her right heel hurts sometimes--I believe she is coming out of the brace starting with the right heel, and it's rubbing her heel against the brace.

She also came home from school completely out of her DAFOs--still wearing them, but basically with only her tippy toes in the heel cups. In otherwords, the braces as is do NOT keep her heels from coming up and her feet escaping the braces. Granted, she was probably playing on the floor when she started slipping out (we hadn't had much of a problem at home with this) but the fact that she was walking so oddly and in pain was very upsetting.

I'm going to give these DAFOs a good solid try...but I have to admit, I like the way her old style performs.

Thursday, September 10, 2009

I have just been informed by our physical therapist that Simona DeMarchi, a Certified Cuevas Medek practitioner is coming HERE! She will be coming to train therapists with this method at our local therapy center.

The course will be from November 30th-December 4th.

Unfortunately, Simona does not live here, but perhaps soon one of our therapists will have completed their training and we can receive CME services.

Even bigger news--they will be using E as a practice model!

There's more--if YOU are interested in your child being a model for this session, contact me. I will route your contact information to the coordinator here. They are particularly looking for children with poor head/neck control. There is no cost for the CME treatment for your child, and parents are welcome to observe the laboratory portion of the course.

If you are a therapist and are interested in taking this course, it is a 4-day course with an optional 5th day for clinical practice. The course will be taught by Simona DeMarchi, PT, CME IV practitioner. Contact her at simona@blue-balloon.com for further information.

I am very excited about this! November 30th is right around the corner!

Wednesday, September 2, 2009

Theresa worked with E sans AFOs today. She did pretty well--better than I would have expected!

The idea behind this approach is to challenge her balance/movement by giving her support further and further away from her core, while allowing E to (hopefully) initiate or complete posturing or movement herself. The goal today was to try to get her to stand up tall, with minimal support (at the ankle). Since she can already keep a standing position (with her AFOs) (for a while, but not indefinitely), Theresa also wanted to see how E reacted to getting from the floor, to a squat, to a standing position. She can do this when wearing her shoes/AFOs (with poor form) occasionally.

E wanted to use a ride-on toy; she's done this before in bare feet, with some success. Still, she is taller now, and with the shoes on the movement is usually labored. This is the best I've seen her do it in shoes!

Overall I am very pleased with this. I'm not a total convert, but I definitely see the benefit in working without AFOs. We'll see how she progresses in a few weeks--with exercise and "sneaker time" at home. We're going to start with 10 minutes a day of work, and then maybe some more of just playtime without the AFOs on. I still want her wearing her AFOs and shoes the majority of the day.

Monday, August 31, 2009

I will be posting over this, with pics/video, but last week E went to PT (Jason took her, as I had to be at work early) and Theresa had E work with her shoes on, but without her braces. Jason said she did pretty well--but, in all honesty, I didn't believe him.

Theresa asked us to find shoes to fit her feet, not to fit her AFOs. We found a cheap sturdy pair at our favorite store. It was a real treat to see her in shoes without braces! And much to my surprise--off she went, a little more unstable than usual, and took 5 steps to the next bench in the store! WOW!

I have heard of kids "outgrowing" the need for their AFOs. I thought this *might* happen for E, after she stops growing, before her twenties or so--and then only for short amounts of time. And just b/c she took some steps without her AFOs on doesn't mean it's happening soon--she can't take more than 3 steps in bare feet--but still, I was AMAZED that she moved as well as she did wearing only sneakers!

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.